CZI Rare As One: Co-designing an App and Wearable Based Compass for Rare Diseases (NCT06907953) | Clinical Trial Compass
CompletedNot Applicable
CZI Rare As One: Co-designing an App and Wearable Based Compass for Rare Diseases
United States239 participantsStarted 2025-02-06
Plain-language summary
The CZI Rare As One study is a Chan Zuckerberg Initiative funded study that aims to co-design and pilot test unique symptom tracking and transmitting apps across 5 different sub-arms that includes individuals with Long COVID, Pancreatitis, Sarcoidosis, Vasolin-Containing Protein (VCP) disease and Primary Ciliary disease (PCD). This study aims to use multimodal digital health tools to enable patients to self-monitor their symptoms in passive and active ways.
Who can participate
Age range14 Years
SexALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
GENERAL INCLUSION CRITERIA
* 18+ years (except 14+ years for the PCD sub-arm)
* own a personal mobile device and use this phone to download and use the app for the study
* resides in the US
* be willing to use the study wearable devices
* have a clinician confirmed or suspected diagnosis of one of the 5 rare conditions as defined below in the cohort specific inclusion criteria below:
Long COVID sub-arm:
* have experienced Long COVID for at least 3 months as a continuous, relapsing and remitting, or progressive condition; and
* have experienced within the past week at least one or more of the following symptoms that started or significantly worsened following a COVID infection: shortness of breath, cough, persistent fatigue, post-exertional malaise (worsening of symptoms or fatigue after minimal activity), difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea.
* symptom(s) of COVID significantly impact your ability to work, ability to give care, enjoy recreational activities or reduce your quality of life
* Own a personal iPhone 8 (iOS 16+) or Android smartphone (version 12 or newer)
Sarcoidosis sub-arm
* have a diagnosis of sarcoidosis confirmed by a doctor, and have experienced fatigue for at least 2 days in the past month
* Own a personal iPhone 6s (iOS 15+) or Android smartphone (version 12 or newer)
Pancreatitis sub-arm
* have a diagnosis …